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多发性硬化症日本患者的生活质量影响及其特征。

Impact and characteristics of quality of life in Japanese patients with multiple sclerosis.

机构信息

College of Nursing, Sapporo City University, Sapporo, Japan.

出版信息

Qual Life Res. 2011 Feb;20(1):119-31. doi: 10.1007/s11136-010-9725-2. Epub 2010 Aug 11.

Abstract

PURPOSE

To evaluate health-related quality of life (HRQOL) in Japanese patients with multiple sclerosis (MS) and investigate associations between the results of these QOL assessments and disease severity.

METHODS

One-hundred sixty-three Japanese MS patients completed a questionnaire battery comprising the Functional Assessment of MS (FAMS), the Nottingham Adjustment Scale-Japanese version (NAS-J), and the European QOL scale (EQ-5D). Additional five factors affecting QOL as identified by MS patients in a focus group interview were also investigated: employment status, change of income, availability of disease information, communication with medical staff, and care received. Disease severity was determined using the Expanded Disability Status Scale (EDSS).

RESULTS

There was a strong negative correlation of the subscale scores for mobility, symptoms, emotional well-being, thinking and fatigue, and additional concerns on the FAMS with EDSS score. For the NAS-J, only acceptance of the condition was correlated with disease severity. Among the five additional aspects of the condition identified by patients, employment status, income, and disease information were shown to be important for maintaining QOL in patients with MS.

CONCLUSIONS

Support for finding employment and having increased or maintained household income and readily available information about the disease contribute to improving QOL in Japanese MS patients.

摘要

目的

评估日本多发性硬化症(MS)患者的健康相关生活质量(HRQOL),并调查这些 QOL 评估结果与疾病严重程度之间的关联。

方法

163 名日本 MS 患者完成了一个问卷组,其中包括功能评估多发性硬化症量表(FAMS)、诺丁汉调整量表-日本版(NAS-J)和欧洲生活质量量表(EQ-5D)。还调查了焦点小组访谈中 MS 患者确定的影响 QOL 的另外五个因素:就业状况、收入变化、疾病信息可用性、与医务人员的沟通和护理。疾病严重程度采用扩展残疾状况量表(EDSS)确定。

结果

FAMS 量表的移动性、症状、情绪健康、思维和疲劳以及其他问题的子量表评分与 EDSS 评分呈强烈负相关。对于 NAS-J,只有对病情的接受程度与疾病严重程度相关。在患者确定的病情的另外五个方面中,就业状况、收入和疾病信息对于维持 MS 患者的 QOL 很重要。

结论

支持寻找工作、增加或维持家庭收入以及获得有关疾病的信息有助于提高日本 MS 患者的生活质量。

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